When Sara’s* son was 17, his behaviour changed dramatically. He’d always been a great student, sweet and mild-mannered, and he had tons of friends. But suddenly he was moody and irritable. He decided he didn’t want to go to university, despite having worked hard to get into a competitive program. He started to have panic attacks, and spoke of wanting to kill himself. He would take off in the middle of the night, disappearing for hours at a time. One night when she couldn’t find him, Sara called and texted repeatedly before he agreed to let her come and pick him up. He was at a railroad track, thinking of jumping in front of a train.
Sara’s son was in the prodromal phase of psychosis, a period marked by significant changes in a person’s mental state that precedes a psychotic break. After taking him to the emergency department multiple times over the course of a year, Sara was able to get her son into an early psychosis intervention program, which is considered the standard of care for people who have experienced a first episode of psychosis. EPI programs typically run for two or three years, and include a combination of medication therapy, case management, family support, and counselling specific to education and employment. The research is increasingly strong that EPI improves outcomes in myriad areas: symptom severity, relapse rates, involvement in school or work, and mortality. Since 2005, it has been a catchmented service in Ontario, which means everyone in the province should be able to access to it.
But there is concern that EPI isn’t reaching as many people as it should—women, for example, and people who live in lower socioeconomic neighbourhoods—or as quickly as it should. EPI is resource-intense and capacity is a challenge, but some groups wait longer than others to access it. There is also great concern about how people fare when EPI ends, and whether two or three years in the program is really enough.
Here’s a look at some of the barriers EPI has broken down in the treatment of psychosis, as well as some of those yet to be overcome.
How EPI changed our view of schizophrenia
As recently as the early 1990s, schizophrenia was considered a progressive, deteriorating disease from which recovery was not possible; patients were treated primarily in institutions, and only once they were very ill. “There were no services for a person with a first episode of psychosis,” says psychiatrist Robert Zipursky, professor at the University of Toronto and a pioneer in the early intervention movement. “You might get admitted to hospital but then you got sent to your family doctor. If you got admitted five or 10 or 20 times, you probably found your way into a specialized programs for the chronically mentally ill.”
In 1992, Zipursky began the First Episode Psychosis Program at Toronto’s Clarke Institute of Psychiatry (which later became part of the Centre for Addiction and Mental Health), with the goal of understanding how to improve outcomes for patients. He was part of a growing group of clinicians in Canada (and also in Australia, the U.K., the U.S., and Scandinavia) who believed it wasn’t reasonable to treat schizophrenia only when it had reached its most debilitating stage. “You don’t want to invest all your resources once somebody has become totally disabled,” he says. “It would be like focusing all your diabetes resources on amputation or blindness.”
Zipursky was part of a Working Group on Early Intervention which formed in 1999 and which persuaded the Ontario government of the importance of EPI. By 2005, the Ministry had rolled out funding to support EPI programs across the province and today, there are more than 50 of them, as well as provincial program standards, which were issued in 2011. “The whole orientation of intervening for schizophrenia has changed dramatically with the early intervention movement,” says Zipursky. “There’s a belief that people can remit, they can stay well, and they can have a meaningful and satisfying life.”
When the movement started, there was a lot of interest in the idea that the longer the duration of untreated psychosis (DUP), the worse a person would do. The theory that psychosis is toxic to the brain is an open question, says Aristotle Voineskos, director of the Slaight Family Centre for Youth in Transition at CAMH, but “what is more conclusive is that there’s an association of DUP with poorer outcomes,” says Voineskos. “And it makes sense. The longer you stay unwell, the longer you may be out of school, out of work, cut off from society. Re-integrating and getting back on your feet becomes harder as you miss your developmental time points.”
How does EPI help?
In May 2018, JAMA Psychiatry published a systematic review of 10 randomized clinical trials comparing outcomes of patients in early intervention programs with those undergoing “treatment as usual.” Overall, the review found that outcomes in seven discrete measures were significantly better for those who participated in an EPI program. They were 12.6 percent more likely to be in school or employed; they improved by 24–30 percent in terms of remission, relapse, hospitalization, treatment engagement and recovery.
Also in May 2018, a retrospective study looking at 17 years of population-based health administrative data for people who had used EPI programs in Ontario was published in the American Journal of Psychiatry. The research found a striking difference between EPI users and non-users in rates of all-cause mortality (which includes suicide): less than 0.5 percent for the former; 3.9 percent for the latter.
“In first-world countries, it’s really rare for a young person to die,” says Voineskos. “But people do die from mental illness. They die from suicide; they are at increased risk of being victims of violence and of getting into violent situations and accidents because of bizarre behaviour.” One of his own patients was stabbed nearly fatally following a conflict with someone he didn’t know outside a liquor store. A recent study published in Schizophrenia Bulletin found that the 12-month mortality rate of people aged 16–30 experiencing psychosis for the first time was 24 times higher than the general population in the U.S.
“Our goal at the Slaight Centre is to achieve full recovery,” says Voineskos. “We’re going for the very highest bar, [but] I think sometimes we don’t give ourselves enough credit for what’s pretty amazing and pretty remarkable—just saving people’s lives.”
While in the EPI program, Sara’s son attempted suicide twice, and was admitted to hospital at least 10 times. “Those hospitalizations may not appear to be a success,” she says. “But they are. Because he understands now, ‘If I’m feeling this way I go to emerg.’ In someone as severely ill as my son—who has been treatment-resistant to medications—the fact that he’s alive is a success.”
Who isn’t getting EPI?
The group that produced the retrospective population-based study mined the same data to get a handle on who EPI users are—and aren’t. They learned that only about 50 percent of people experiencing first-episode psychosis received the service. EPI users skewed young, with decreasing odds of a person accessing the services the older they were. Men had nearly 50 percent greater odds of EPI admission than women, which Kelly Anderson, lead author of the study and assistant professor at Western University, suggests may be linked to the age factor, as women tend to have a later onset of psychosis.
The research also found that “people living in the most deprived areas were half as likely to be admitted to EPI services relative to those in the least deprived areas.” The reasons for this are unclear, says Anderson. It may be that people in lower socioeconomic areas aren’t following through with referrals; it may be that they’re less likely to be referred in the first place. It could be that they face barriers to accessing service or that they prefer to receive care from their family doctors. “There could be a lot of things happening there,” says Anderson.
Previous research that Anderson contributed to found that people of Caribbean origin who had a first episode of psychosis went a median time of 16 months before starting early intervention services—roughly twice as long as those of white-European origin. “The thing that was elongated wasn’t the time from first contact with services to getting into early intervention services,” says Kwame McKenzie, CEO of the Wellesley Institute in Toronto, who also authored the study. “It was the time from first recognition of symptoms to getting any help at all.” McKenzie believes that the Caribbean community’s experience with social and health services may be a factor. “People believe that they’re going to get medicated, that they’re going to get locked up, that they’re going to be victims of discrimination,” he says. “The services don’t help themselves, because the first thing they’ll say is, ‘Oh, it’s stigma in the Black community, and that’s why people don’t come forward.’” McKenzie thinks rather that a “negative community narrative” has developed, that there has been a “failure of services to realize that it may be something to do with the way they’ve been offering services to the Black community that is an issue.”
“I don’t think we’ve ever done a good qualitative study to find out exactly why there are delays in people getting service,” says McKenzie. He points to research showing that people of Caribbean origin have a 60 percent increased risk of psychosis compared to people born in Canada, and also to data that Ontario spends 10 percent less on the mental health care of people of Caribbean origin than they do on those born in Canada. “If you’ve got populations with high risk and low use, whether it’s early intervention services, inpatient services, case management services, it’s all the same,” he says. “We’re just not reaching diverse populations in an equitable way.”
What happens when EPI ends?
In the population-based study on EPI outcomes, data was gathered on the three years subsequent to people completing a two-year program and revealed a concerning development: The rate of all-cause mortality for EPI users increased to 1.5 percent, while for non-users it decreased to 1.7 percent. A major benefit of EPI that this study identified—helping people stay alive—did not seem to carry over once service ended.
At the Slaight Centre, funding for early intervention runs out after three years. Staff have “a tremendously difficult time finding new care providers who feel adequately resourced and capable of providing care” in the community, says Voineskos. Typically, there are two options: patients are referred back to primary care or to intensive case management at an outpatient clinic, which allows them to see someone as often as they need—a nurse, or social worker, or occupational therapist—while still being monitored by a psychiatrist.
Sara’s son is nearing the end of his three years in EPI. He is taking a six-month coding course at a university and getting A’s, and he still sees his old friends. He has much more insight into his symptoms, but he is still quite ill, and in need of considerable support. Recently, Sara took him to an outpatient clinic for an assessment for case management. The patients he saw there were much older than him, and appeared very ill. He said to Sara: “Mum, I’m not that sick. Why are they sending me here?”
A 2017 study out of Montreal led by Ashok Malla, another of EPI’s Canadian pioneers, found that patients randomized to a three-year extension of early intervention (in Quebec, the service is funded for two years) were in remission for significantly longer than patients in regular care. The authors suggest that these findings may have policy implications regarding the length of EPI. Because EPI is resource-intensive, funders of health care will likely require estimates of its cost-effectiveness before making a decision about extending the service beyond two or three years.
Sara would like to see EPI extended for people like her son. “He’s a 21-year-old kid who’s trying to see a future for himself,” she says. “He still has hopes for recovery and to lead a functional life.”
*Name has been changed for privacy
Correction: This story has been updated to reflect that Robert Zipursky is a professor at the University of Toronto and not McMaster University.
The comments section is closed.
When I used to work in mental health, I often empathized the newly diagnosed patients with schizophrenia. They are usually in their teens or early twenties – often had a relative normal life up until their diagnosis. It seems that their lives just started falling part, they cannot finish schooling, have difficult holding down a job. Often friends and acquaintances they knew before their diagnosis would not have a good understanding of their condition – so misunderstanding or alienation may occur. Hence their social lives would also be falling apart. They often feel alone – their family members may only starting to learn about the condition and not necessarily know how to support them. This is just the beginning of a journey that may be haunted with many repeat hospitalizations and / or other unpleasant events. Early support is vital. But finding a cure is the answer.
Thanks for a very helpful article!
A very good wake-up call for caregivers.
EPI is a great approach, but it isn’t readily available to those in need in ON or Canada more broadly. People who know people struggling with schizophrenia or psychosis know that support needs to be available at any time, not just when it suits the system. Sometimes you only have a glimmer of a moment to get your loved one in a car to a hospital or clinic before the opportunity passes. Referrals are often a prerequisite for inclusion in such programs, which pose massive barriers to access. Especially amongst a population with low levels of trust in institutions, health care providers, bureaucracy etc. Not having access to a primary care physician also poses problems in accessing these services, and ongoing care/treatment barriers persist. My brother struggles with his diagnosis and access to supportive care. It had meant multiple hospitalizations and bouts of psychosis since his initial diagnosis. It also means that he is suffering from poorer health and social outcomes, which as someone you love is hard to stand by and watch.